Pam Malhi – The Journey I Never Planned!..

AutismThis is my story of Autism  to give you an insight.. Autism is an issue that needs highlighting within our community.

 

As I look at my daughter, my first born I feel pride, I feel love like I’ve never felt before, the emotions I can’t describe in words.

I remember the day she was born with all the complications during labour I just wanted her to be ok, I remember looking at her and thinking how perfect & beautiful she is. The truth is I really had no idea about the journey we were both about to undertake, I had no idea what was coming, and it’s been a journey that truly shaped & changed my life in a way I never thought possible!

By the time she 2/3 months I had the feeling that something wasn’t quite right but couldn’t have guessed what was about to happen. Health visitors, specialists & numerous hospital visits became a weekly occurrence!!

I was told she’s a late developer & maybe the trauma during the birth had caused this.

So, I waited patiently, tried to engage her in play, willed her to give me a reaction, any reaction, my heart cried out just for eye contact. It didn’t come till much later, but it broke my heart in a way I couldn’t ever explain. In the months that followed I did whatever I thought would help her, tried every theory, every therapy, researched the signs which all lead to being a late developer. She crawled at 12 months and just about walking by 18 months. She walked with a ‘wide base gate’ as the doctors called it, it’s a bit like how penguin’s walk.

At 19 months she started having febrile seizure’s. Every time she had a high temperature she would start fitting & stop breathing, the first one was the most terrifying thing I ever witnessed. I remember saying, it’s sounds so bizarre now, “don’t you dare die on me, where in this together”, she had many more up until she out grew them when she almost 4. I learnt CPR & recovery position so I could save her life.

At 2 she was given a full time nursery placement in the hope this would bring her on, and help with her development. I prayed it would, but it didn’t. She was given a team of specialists from speech & language, music therapy, physiotherapy & development support. As I watched them watching my child, I willed for an answer I wanted a cure, I wanted to hear her talk, I wanted to take her to the park, feed the ducks, I wanted her to play, I wanted to tell her off, I just wanted my little girl to be my little girl..

I remember planning days outs and where I would take her, how I would show her all these wonderful things. How I would show her how magical the world is. In my head I’d already planned her birthdays, the parties, school, college, driving lessons, uni, her falling in love and planned how she was gonna have the mother of all weddings. In reality this was never gonna happen. My every dream for her was crushed. It was gone. She was never gonna experience any of it!!

I can’t explain the shock, the hurt, the utter devastation I felt the moment I knew the journey we were on wasn’t the one I had planned. This wasn’t what I wanted!! This can’t be happening to me! Why me, why my child, why was God doing this and for a short time I hated him and lost all my faith. She was 3 when I was told she had serve global development delay, she has communications difficulties, she had a learning disability and she’s showing her all the signs for ASD. (Autism spectrum disorder) she had a lifetime disability with no hope & no cure!!

Just after the diagnosis she got ill and she was rushed to hospital, I was given the news “she had meningitis” those 16 days were the longest of my life, I was asked to say goodbye to her 4 times during them 16 days! The diagnosis of her disability, the fact I was told I couldn’t have anymore children after her birth even the realisation that my marriage was falling apart none of it truly mattered!! All that mattered was that she lived, I needed her to stay alive. I guess at that time I found my faith again I prayed, I promised, I swear I would give her the happiest and perfect life I could all he had to do was keep her alive & he did.. I never ever doubted my faith, my strength or his love for me again.

So we started our new journey the world of Autism. Although at 11 she was officially again diagnosed with severe autism with low functioning ability’s. She was non verbal till 4, only making sounds similar to a toddler learning to talk. The words just weren’t there. She started a full time school placement, she couldn’t talk, she couldn’t walk properly and she was still in nappies. Alexandar School, the school that changed our life. By 5 she was saying a few words even if I was the only one that understand them. Just before her 6th birthday she called me “Mum” I cried for a month and would even wake her from her sleep to hear her say it, I waited so long that even then it seemed unreal. Yes she had the diagnoses but that wasn’t gonna stop me, I embraced & accepted this but it wasn’t the end. She was gonna do all the things they said she couldn’t & I was gonna make sure she did. Well the help of the school and some truly special friends. We had a plan, when one thing didn’t work, I tried another, another & even another till I found a way to make it work. It wasn’t always easy, it’s the most challenging, emotional, heart-breaking journey any parent will ever face… It broke me many times and ripped out my heart many times over the years. I cried myself to sleep many nights, but I refused to be beaten. I made a promise to God & I had a duty to my daughter.

Progress was slow and sometimes none, it was painful looking at everyone’s children the same age as her, they reached all the milestones, hit all the targets yet mine didn’t even know her own name. She learnt simple words and needed lots of visual input. I refused to have her taught sign language, I wanted her to talk. Sometimes I’d spend months repeating a word till she understand it. Months repeating simple sentences so we could have conversation. It’s been a very long road to get where we are today. Even when she was finally toilet trained at nearly 10, I couldn’t explain my joy at throwing away those nappies that I carried around for the last 10 years. When she was 7 I was granted what I believe to be another miracle, I fell pregnant with my second daughter, I prayed only for a healthy child, I spent 9 months living on the edge, after she was born I watched her every move, I watched her eyes as I moved toys in front of her, I made loud noises to see if she would react to them, I’d been blessed yet again she was hitting the milestones, but God had one more surprise for me, Aneesa was 11 weeks old when I fell pregnant again, against all the odds. In all honesty I was scared. I was thinking I’m I pushing my luck? Aneesa was healthy showing no signs of autism. Would I be so lucky again, but I was and along came Cameron. I was given the chance to be a Mother again this time it was different, they both hit the milestones, both made progress as and when it was expected. My marriage had ended, it hurt like hell but he didn’t deserve any of us. 3 kids all in nappies, sleepless nights & a conveyer belt system to get all 3 see to it. Aaisha found the change of being her and now 2 babies. She hated it when they cried and wouldn’t engage in play. That came much later when they were talking & walking she would play but never for long. As I sat with the other 2 and taught them new words, I made Aaisha sit amongst us, sometimes we wouldn’t get any input from her, other times she would repeat words.

I truly believe her siblings have played a huge part in extending her language. She has 40/50 words, she can’t read, she can’t write, she can’t spell. She can’t say her alphabet and some days she can count to 10, somedays she can’t. She can’t open a bank account because she can’t sign her name. She’ll never have a driving license. She’ll never take a walk to the shops on her own, I can’t ever leave her on her own. She can’t brush her teeth or even comb her hair. She’ll always need a Carer for every day of the rest of her life. She’ll never experience college or new friends, even falling in love. She’ll live in her own world for every day for the rest of her life! Meltdowns, tantrums, changing plans at the last min are as much a part of our lives as brushing our teeth every morning. As I look back on the 18 years since she was born, I see pain, I see hurt, I see heartache that I can’t ever explain, but most importantly I see a journey of triumph against all the odds. I see pride, I see heart warming moments, I see priceless moments. I see progress.. She wouldn’t walk, well she does She won’t talk, well she does She won’t understand anything, well maybe not everything but she does She’ll would always remain nappies, well she isn’t.

Our journey is one of passion, one of faith, one of hope, one of never giving up, one of defining the odds against us. I’d be lying if I said I still don’t feel pain or I don’t have heartbreak for the broken dream I had. I’d be lying if I said it gets easier. I’d be lying if I said the meltdowns don’t bother me, they break my heart each time, I feel so helpless when I can’t comfort my child. I’d be lying if I said I’m used to it. I’d be lying if I said it’s ok. I’d be lying if I said I like Autism. I’m human, I’m her mother.

But the truth is this special little girl changed my life completely, she showed me anything is possible with hope & faith. She showed me the way she made the path I followed it. She gave me more than I could ever give her. She the true definition of unconditional love. She’s my true angel my very own gift from God.

Our journey continues every day, we get through the bad days with faith, we laugh through the good days with hope. I’ll never give up on my daughter, we still have targets to reach, barriers to break, and progress to make.

Autism isn’t the end of the world it’s a new beginning, a whole different world, a world that’s embraced & accepted and loved beyond bounds in our house….

By Pam Malhi – Connect on FB